Behcet's Disease

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    Tessa Koller

    How I Feel When My Health Condition Becomes Visible

    In my experience, there is nothing worse than a medical condition you’ve felt terrible about suddenly becoming visible and there is no denying that you have it. Over the years, I’ve grown to love every square inch of my health and self, but these health conditions I endure put my many beliefs to the test. Now that it’s summertime, I’ve been unbelievably self-conscious about my appearance. About a month ago, after having gone through months of long-haul COVID, I was then diagnosed with Behcet’s disease, an autoimmune form of vasculitis. It’s disheartening and painful, and when I’m in a flareup, the world is dead to me and vice versa. During these flare-up periods, I have the tendency to feel like my health is my worst enemy. If you also have many diseases, such as heart and lung disease and autoimmune diseases, then you can probably empathize with me when I say that I feel like my symptoms and conditions have an agenda: to keep me down emotionally and physically and wreak utter havoc in all aspects of my life and world. I’ve had this paralyzing thought while I was running around Croatia and Paris in recent weeks and struggling to enjoy myself despite not being at my healthiest levels of energy and strength. I’d had another arrangement planned for those trips that didn’t pan out the way I’d hoped or had initially wanted. And I knew all my health struggles in the previous few months caused this colossal turn of events I couldn’t have anticipated. Though everything went well and my work and vacations were major successes, my heart was somewhat dinged and shattered. My health had, yet again, affected and changed the course of something it shouldn’t have. This has been a recurring problem for me. Good things will happen in my life but last only a short time. Then, I’ll get another diagnosis of some condition or disease and I won’t be able to lie or hide its impact. Not only do my health issues affect me physically, but they also cause turbulence in my personal life as well. When I was in Croatia, I had to do a lot of work at a scientific medical conference for those with the rare disorder, 22Q11.2 deletion syndrome or DiGeorge syndrome. All the while, I was taking an antibiotic to resolve the uncomfortable stomach discomfort I was having and I’d developed a severe reaction to it, as I do with most antibiotics. I broke out into hives, but already had a small rash from the vasculitis and was beside myself about how I looked or thought I looked. My mom and everyone around me kept saying that I looked fine and it was all in my head. Your family and friends will want to uplift you and tell you what you want to hear, but I know when I don’t look my best. Throughout most of the conference, I wore light khaki-colored pants though it was 90 degrees outside. I stayed in the cold air-conditioned hotel most of the time when I could and avoided baring my arms and legs. Feeling like I have to hide parts of myself goes against my belief systems about body positivity and body shaming. But, these health conditions make it difficult to expose to others my flaws and insecurities while trying to make everyone else believe I’m totally fine about how I look and feel (but am far from fine about those things). I’m comfortable wearing pants regardless of how hot it is outside. I don’t need everyone I encounter asking me if I’m OK and healthy when I am but don’t quite look the part. It dawned on me that diseases, visible or not, aren’t flaws or something we should feel insecure about, but I do and it takes a lot for me to restructure these thoughts in my mind. When a disease becomes visible, it becomes more real and harder to live with. I’ve found some creative healing solutions now for dealing with the discomfort and making this disease less visible and impactful. What I really need to focus on is my mind and thoughts about my body and appearance. I know, deep down, that my health is not the enemy; it’s just something I live with and have come to embrace through my art and work.

    Community Voices

    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    <p>Have you ever met anyone who lives with the same <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> as you? What was it like?</p>
    9 people are talking about this
    Community Voices

    How long did it take you to get diagnosed with your rare disease?

    <p>How long did it take you to get diagnosed with your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    18 people are talking about this
    Tessa Koller

    Long-Haul COVID-19 and Receiving a Behcet's Disease Diagnosis

    After months of illness, physical pain, and inability to do everyday activities without health interruptions, I thought long-haul COVID-19would be my only struggle, and I’d overcome it. I was eager to get back to my life — running my little sewing business and doing the artwork I love. Back in August 2021, only four months post-vaccination, I contracted the Delta variant of COVID-19, and my symptoms were between moderate and severe but leaning closer to severe. I’d spent my two weeks with the virus and then noticed most of the symptoms didn’t resolve — the headaches, nausea, and chest pain when coughing, along with a host of other symptoms. Long-haul COVID-19 sent me to the emergency room numerous times with breathing issues, digestive distress, and other debilitating symptoms nobody could explain. The only information I knew for certain was that this was long-haul COVID-19 wreaking its havoc on every cell in my body. In the last three weeks, my health took another turn. A strange set of symptomatology that all seemed unrelated began having its way with me. From a strange metallic taste in my mouth to unusual chest pains, it felt as though I’d caught COVID-19 yet again. At first, some symptoms presented as fibromyalgia, but the pain felt deeply rooted in my bones, joints, tendons, and tissues. For about five days and nights, I was experiencing so much physical pain and agony that I couldn’t lie down on any part of my body. It hurt too much to sit, stand, and lie down on my stomach and back, and I found myself sitting on the floor of my bedroom sobbing myself to sleep or even not sleeping at all. Other symptoms, more personal ones I won’t be listing here, really put me through the wringer, and frequent hospital visits were causing me an undeniable amount of stress and anxiety. One symptom specifically led a nurse practitioner to believe that this was a Behcet’s disease autoimmune flare-up I was experiencing. It was like a funnel cloud had formed above my head and dropped right on top of me, upending everything in my life. In case you’re unfamiliar with Behcet’s disease, it’s a rare condition that is similar to vasculitis. The autoimmune disease had already spent months attacking my digestive system, immune system, lymphatic system, and many other bodily systems too. For about three weeks, I’ve been in the middle of an autoimmune flare-up that has been testing me to an extreme degree. To boot, I found out I have not one, but three bacterial infections that have all been utterly distressing. Still, I am relieved knowing this won’t be a forever situation, and it’s treatable and temporary. Perhaps I’m stronger than I give myself credit for, but the despair I felt in learning that I have Behcet’s disease has affected me on so many levels that words can’t express. There is no way for me to properly articulate what I’ve been going through with this disease. I’m still learning about Behcet’s disease, but I found myself undeniably angry that my lengthy battle with long-haul COVID-19 has led to it. The toll this autoimmune disease has taken on my mental and emotional health and well-being is irrefutable. On a better note, though, I’ve heard many positive things about this condition, including that people have been able to successfully tame Behcet’s almost to the point of full remission or to experiencing less frequent flare-ups. I’ve adopted a new way of eating and managing my health and lifestyle and am trying to be patient with my healing process. Being immunocompromised has made me realize how complex the immune system is in its reactions and responses to vaccines and diseases too. When I found out that Behcet’s disease is the mysterious autoimmune condition that was causing me so much trouble for all of these months, I didn’t want to accept or talk about it. However, our health is a part of us — whether we like or accept it or not. Our health isn’t the enemy — it can help us find new ways of living that may benefit us even more. It’s important to find resources that help you work with the sadness and grief a diagnosis like this can cause and be patient with the healing process. I’m utilizing the tools within me to move through this autoimmune flare-up: meditation, nutrition, a holistic approach to treatments, and of course, my art (when my energy allows it). Though I’m not happy about my Behcet’s disease diagnosis, I am hopeful about getting on a new path toward wellness that nourishes and enriches my health and life in the long term.

    Community Voices
    Community Voices

    What frustrates you most about living with a rare disease?

    <p>What frustrates you most about living with a <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    20 people are talking about this
    Cat R.

    My Medication Routine for Behcet's Disease Rules My Life

    I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

    Cat R.

    Grieving Your Old Life When You Live With a Chronic Illness

    You know that feeling you get when a memory pops up or you come across an old photo of a loved one who passed away? That overwhelming feeling of sadness, accompanied by the memory of emotions from that exact moment? That’s how I feel when I see old photos of my healthier self, when I see myself doing the things I loved. I look at that person as someone I’ve lost — and in some ways, I have lost her… that version of myself no longer exists and sometimes that’s hard for me to comprehend. I feel like my life has had a very clear divide — pre-2017 and post-2017. I’m not saying my life was perfect pre-2017, as it definitely wasn’t, but I have moments of sadness and grief for the life and health that I had. Singing/performing on stage, freedom, independence, being able to drive, no regular treatments, no throwing up all the time, even the capability to have a poo whenever I needed one, and having a body that I could (mostly) rely on. The last few years has taught me so many lessons and shown me how to be comfortable in my own skin. I’ve learned not to take anything for granted and to be grateful for life, but it still doesn’t stop the gut-wrenching pain I feel when I’m reminded of what I was once capable of doing and what my life once looked like. I used to get angry and uptight, but I’ve learned to sit with it and accept that it’s OK to grieve. My illness has taken a lot from me and it’s OK to not be OK with it! It’s OK to be frustrated I can’t have a bath/wash my hair without help. It’s OK to be frustrated that I can’t leave the house on my own. It’s OK to be frustrated that my schedule revolves around my medications and treatments. It’s OK! This is not what a “normal life” looks like and it’s OK to feel these feelings of anger, hurt, and grief for the times when I was able to do these things. I used to hate looking at old videos and pictures of me, but it’s getting easier. It’s strange because I’m so much happier and content with my life now. I’m the happiest I’ve ever been in my relationship and feel so thankful for the amazing blessed life I have. I know that in my “old life” I wasn’t truly happy and I wasn’t content. I didn’t appreciate life, and I took even the littlest of things for granted. I know I have grown so much from everything I have had thrown at me in the past few years and a lot of people ask if I had the choice to change it, would I? The answer would be no, because although I’ve been on a tough path, I believe it’s leading me to where I need to be. My outset and outlook on life is totally different now. I appreciate more, I understand better, I take notice of the small things, and I open myself up to what I need to learn. I do miss the freedom and independence that my health gave me. But I’ve learned that it’s totally understandable that I miss it. It’s OK to grieve for the loss of my old life and to even get angry about it. Be kind and don’t be too hard on yourself.

    Cat R.

    Why Understanding the Origin of My Behcet's Disease Matters

    “Why me?” This question pops up when I’m spiraling or having a rough time. This question has popped up a lot recently as I’ve been exhausted and overwhelmed with constant trauma (not just with my illness). I always seem to loop back around to it somehow being my fault or something I deserve. Logically, I know this isn’t right, but our brains work in weird ways and I end up beating myself up and putting some kind of blame on myself. I spoke with my psychologist about this. He obviously couldn’t tell me why I’ve been handed so much to deal with, but he did try to explain a bit of the history behind my illness which helped me logically process “the why.” Behçet’s disease (also known as Silk Road disease) is found predominantly in people with ancestors along the Silk Road. For nearly 2,000 years, traders used the 4,000-mile network linking the Far East with Europe to exchange goods, culture and, in the case of the Silk Road disease, genes. What I found really interesting is that my Nan’s family originated from Norway and the Norwegian trade routes included the end of the Silk Road which makes a very likely explanation for me having the gene. Although it’s still totally random that out of our family/ancestry line, I’m the one who has the gene, it helped me to process that it’s part of my history and from my ancestors’ past rather than just random “bad luck.” This has been so important for my mental health, to work through the logical explanations rather than beating myself up about the whys and the things I can’t control. They say knowledge is power and in this case, that’s absolutely true!

    Community Voices